Radiation Therapy Oncology Group (RTOG) Semi Annual Meeting Cancer Disparities Research Partnership Programs (CDRP) Jan

1. Radiation Therapy Oncology Group (RTOG) Semi Annual Meeting Cancer Disparities Research Partnership Programs (CDRP)January 18, 2008 The Evolution of a Novel Radiation Oncology Cancer Disparities Research Program in an Indigent Los Angeles Community Urban Latino African American Cancer (ULAAC) Disparities Project Michael L. Steinberg, MD, FACR, FASTRO Principal Investigator David C. Khan, MD Co-Principal Investigator Nicole C. Harada, CCRC, CCRP Research Coordinator/Data Manager

2. Project Updates • Navigator Training Program • Patient Data • Barriers to Care • Clinical Trials • Telesynergy • Quality Assurance • Instability of Health Care Delivery in South LA • Publications • Media Coverage

3. Patient Navigator Training Program • The 9-hour navigator training course emphasizes: • Investigating and implementing resources for patients in a timely fashion • Listening compassionately and non-judgmentally • Completing appropriate records of all interactions on behalf of the patient • Empowering patients to self-advocate in the healthcare realm

4. Training Program Improvements • Prospective navigators are interviewed rather than oriented(effective 9-05) • Increased focus on clinical trial benefits and patient protection (effective 1-06) • Increased training time from 6 to 9 hours (effective 9-06) • Added patient/navigator dialogues (effective 9-06) • Added charting exercises (effective 9-06)

5. Navigator Support • More clinical trials in-services • In-services on related health topics • In-services on available resources • Checking in by phone or note with “absentee navigators” • One-to-one recordkeeping support • Greater physician presence at meetings • Four-page monthly newsletter starting June, 2007 • Field trips every two months starting July, 2007 • Birthday recognition • ACS teleconferences

6. Navigation Process • Overseeing and addressing immediate barriers to care (June 2005) • Formalizing the process of offering navigation to patients (June 2006) • Increasing navigators’ presence in Radiation Oncology (August 2006) • Defining in-house navigator role (October 2006) • ULAAC move adjacent to Radiation Oncology (April 2007) • Including navigator input when clinical trials are offered (June 2007)

7. Training Program • 22 active navigators • 18 Women • 4 Men • 11 cancer survivors

8. Patient Data Patients accepted navigation by gender: 208 Males 207 Females 64% 36%

9. Ethnicity of Patients Accepting Navigation To Date

10. Most Common Reported Barriers to Care of Patients Approached

11. Measuring the Effectiveness of Barrier Solution Identification • Patient-specific barriers to care are identified during the patient intake conducted by a navigator • Records are maintained and audited to determine number of days to barrier solution identification • Barrier solution includes assigning a navigator (psychosocial barriers) and identifying community resources (functional barriers)

12. Mean Number of Days to Barrier Solution Identification from April 2005 – November 2007

13. Trials Open for Accrual

14. Clinical Trial Accrual/Navigation

15. Patients Accrued to Trial

16. Accrual to Trial by Ethnicity

17. ULAAC Health Services/Quality Instruments • Patient Satisfaction Survey • Administered monthly via telephone • Quality Assurance Patient Evaluation Survey • Administered monthly via telephone • Cancer Post-Treatment Survey • Administered at first follow up visit

18. Health Services Instruments

19. Patient Pretreatment Condition • No statistically significant differences detected in measured baseline conditions between those who opted for / against navigation (n = 197). • No statistically significant differences detected in patient Education, Income, Marital Status.

20. Cancer Post-Treatment Survey During my cancer treatment… • 4 point Likert scale: 0 = Never… 3 = Always • No statistically significant differences between patient’s navigated / not navigated detected in retrospective self-report of cancer treatment phase.

21. FACIT-G – Functional Assessment of Chronic Illness Therapy (General) • Patients opting for no navigation faired better than those who were navigated on 5 of 8 metrics (*p< .05). • Findings may be attributable to preexisting differences in social support systems, sense of personal independence, emotional robustness, prognosis, treatment methods, etc. • Corresponding qualitative investigation in progress to explore this issue in depth.

22. Patient’s Evaluation of Navigator • Likert scale: 1 = Strongly Disagree… 5 = Strongly Agree • No statistically significant differences detected in patient satisfaction scores regardless of navigator’s cancer history.

23. Patient Overall Satisfaction with Navigation Service

24. Focus Groups Conducted by RAND Corporation by Project Year

25. RAND Patient Care Survey Purpose • To assess patient experience with and elicit feedback about the Patient Navigator Program • The information collected will be used to document aspects of the program and lessons learned to be able to share with other sites interested in having a Patient Navigator Program as well as to inform the current program • The target number of 40 patients (both navigated and non-navigated) • Feedback will be presented to program at the end of data collection and analysis

26. RAND Patient Care Survey Methods • Telephone survey • Administered to patients who had a navigator and those that chose not to have a navigator • Administered mid- and post-treatment Instrument • Semi-structured • Domains include: • Barriers • Self-Efficacy • Patient Satisfaction • Quality of Interaction • Demographics

27. Continuous Quality Improvement Process • Deming and Juran • Quality Enhancement in Operations • “Lean Thinking” Process to Improve Navigation • value as defined by patient • value stream care mapping processes • one piece flow • Care Process Mapping

28. “Lean Thinking” to Improve Navigation • Current State • Future State Value Stream • Standardization • Elimination of inefficiencies • Decreases number of steps for delivering services • Ultimately improves quality and efficiency

29. Pre-Consultation Intake Patient Referral (Phone call from patient or referring physician) Appointment Made Information Gathered (demographics) Patient Records Requested Financial/ Insurance Authorization Day of Consultation (Patient arrives one-hour early to complete billing/medical paperwork) In House Navigator intake & assessment of barriers In House Navigator discusses clinical trials Physician completes consultation Oncology Nurse Physician (H & P) If eligible for clinical trial, If not eligible for clinical trial, Immediate barriers addressed In House Navigator introduces, discusses, and offers navigation to patient Accept Decline Undecided Radiation Oncology notifies ULAAC if barriers arise ULAAC follows up with patient

30. Initiation of navigation process Navigator Coordinator assigns/matches navigator to patient (taking into consideration preferences & skills) Navigator Coordinator notifies navigator of assignment (mails intake form) SOAP form documentation process initiated at initial call to pt Navigator contacts patient Navigator reports to ULAAC SOAP Audit Navigator & patient arrange face-to-face meeting when possible Welcome letter (including program brochure, and educational materials)

31. Ongoing Evaluation & Assessment of Patient Barriers (ULAAC) Post treatment monthly follow up PRN Structured Interview Coordinates with clinical staff Navigator contacts patient 1-5 times per week during treatment Comfort Calls Navigator Meetings SOAP Forms PSS QASI CPTS Addressing Barriers CTQ RN/MD QA Ongoing Lay Navigation • Barriers recorded in database: • Date • Resources identified • Date resolved • Resolution resource Navigator identifies difficult barriers & coordinates with ULAAC Professional staff assess barriers Barriers are addressed by immediate referral Barriers Audit

32. Instability of Health Care Delivery in the South Central Los Angeles Area

33. CFHS Service Area

34. Instability of Health Care Delivery • 1995 - Tenet Health Systems purchases Centinela Medical Center • 1996 - Centinela Community Foundation formed - $55,000,000.00 • 1997- The money leaves the community, becomes part of California Foundations

35. Instability of Health Care Delivery • 2001 – Daniel Freeman Memorial charts 11th straight year in the red; Tenet comes to the rescue to purchase the financially distressed hospital • 2002 – Tenet melt down…no capital expenditures for Centinela or Memorial campuses • 2004 – Tenet divests Centinela and Memorial campuses • 11/2004 – Robert F. Kennedy hospital closed

36. Instability of Health Care Delivery • December 19, 2006 – CFHS abruptly closes Daniel Freeman Memorial campus (except Rad-Onc, ULAAC, Rehab Svcs) • From 12/2005 – 10/2007 – CFHS promises to move Radiation Oncology and ULAAC Departments to Centinela campus…not forthcoming • 11/2007 – Centinela campus sold site unseen to Prime Health Systems • Prime Health Systems cancels Radiation Oncology Center Venture

37. Instability of Health Care Delivery

38. Kaiser Foundation –West L.A. Brotman Medical Center California Hospital Medical Center Daniel Freeman Marina Hospital Daniel Freeman Memorial Hospital Centinela Regional Medical Center Robert F. Kennedy Hospital King Drew Medical Center/MLK Memorial Hospital of Gardena

39. Down But Not Out • Developing a free standing state-of-the-art Radiation Oncology Center in the community (12-18 months) • Continuing to provide radiation treatment to patients by transferring to nearby treatment center • Transferring administrative responsibility of ULAAC grant to Partners in Care Foundation • Maintaining radiation oncology services for the community by opening a satellite office for consultation, follow up care, and treatment planning

40. A new vision to changing the shape of health care

41. Partners In Care Foundation(Partners) • Partners, charitable, non-profit • serves as a catalyst for shaping a new vision of health care by partnering with organizations, families and community leadersin the work of changing healthcare systems, changing communities and changing lives. • Partners nationally recognized leader promoting innovative community and home approaches in geriatric care management, health promotion, chronic disease management, end of life care, addressing ethnic health disparities and introducing positive practice change. • Partners has an extensive history in testing, adapting and disseminating evidence-based models.

42. Community Partners Colleges and Universities Antelope Valley College, Boston University, California State University, Long Beach, California State University, Los Angeles, California State University, Northridge, Mount St. Mary’s College, Occidental College, University of California, Los Angeles, University of Southern California Hospitals and Healthcare Systems Antelope Valley Hospital, AltaMed, Catholic Healthcare West, Cedars Sinai Medical Center, Children’s Hospital - Los Angeles, City of Hope National Medical Center, Henry Mayo Newhall Memorial Hospital, Huntington Memorial Hospital, Kaiser Permanente Memorial Care Medical Centers, Mission Community Hospital, Northridge Hospital Medical Center, Presbyterian Intercommunity Hospital, Providence Health System, SCAN Health Plan, St. Mary’s Medical Center Long Beach, Veteran’s Administration of Greater Los Angeles Healthcare System Social Service Providers Alzheimer’s Association, Healthcare Partners, Inglewood Senior Service Center, Jewish Family Service of Los Angeles, Joslyn Adult Center, Los Angeles Caregiver Resource Center, Meeting Each Need with Dignity (MEND Clinic), One Generation, Senior Care Network, St. Barnabas Multipurpose Senior Center Public Organizations U.S. Administration on Aging, California Department of Aging, City and County of Los Angeles – Area Agencies on Aging, City of Los Angeles Department of Aging, Los Angeles County – Public Health, Los Angeles County – Health and Human Services

43. Publications • Inequities in Care: Explanations & Solutions for Disparities, Seminars in Radiation Oncology, July, 2008 • Lay Patient Navigator Program Implementation For Equal Access To Cancer Care And Clinical Trials: Essential Steps And Initial Challenges Cancer, Volume 107, Issue 11 , Pages 2669 – 2677 • Preliminary Results and Evaluation of MammoSite® Balloon Brachytherapy for Partial Breast Irradiation for Pure Ductal Carcinoma in Situ: A Phase II Clinical Study, The American Journal of Surgery, 192, p 427-33, 2006

44. Abstracts • Evolution of A Novel Radiation Oncology Cancer Disparities Research Program in an Indigent Los Angeles Community, International Journal of Radiation Oncology Biology Physics, 2007 • Patient Navigators Tailor Interventions in Minority, Low-Income Populations, National Cancer Institute, NCI Cancer Bulletin, Volume 4, Issue 29, 2007 • The Use of Lay Patient Navigators to Improve Quality of Care and Accrual to Clinical Trials for Radiation Oncology Patients Who Are Minorities or of Low Socioeconomic Status, International Journal of Radiation Oncology Biology Physics, Volume 66, Issue 3, p S70, 2006 • Using Telesynergy ® To Improve Access to Clinical Trials at an Underserved Community Based Hospital, International Journal of Radiation Oncology Biology Physics, 2007 • Patient-Centered Satisfaction and Well Being Assessment in a Lay Patient Navigator Program for Underserved Populations, International Journal of Radiation Oncology Biology Physics, 2007

45. Presentations • Experiences of an Urban Cancer Care Disparity Program: A Broadly Applicable Model for Quality of Care Enhancement ASTRO, Los Angeles, Ca., October 30th, 2007 • Disparities in Healthcare: Medical Science Meets Socioeconomics, Politics, Race, Public Policy, and Poverty, Mid Winter Oncology Meeting, Los Angeles, Ca., Jan. 21, 2007 • The Use of Lay Patient Navigators to Improve Quality of Care and Accrual to Clinical Trials for Radiation Oncology Patients Who Are Minorities or of Low Socioeconomic Status, ASTRO 2006,  Philadelphia, PA, Nov. 5-9, 2006 • Do Navigators Make a Difference in Acceptance of Clinical Trials?, ASTRO 2006, Philadelphia, PA, Nov. 5-9, 2006

46. Presentations • Preliminary results and evaluation of MammoSite® Balloon Brachytherapy for Partial Breast Irradiation for Pure Ductal Carcinoma In Situ: A Phase II Clinical Study, American Society of Breast Surgeons meeting, April 2006 • Development of Lay Navigation Program in an Underserved Community, National Leadership Summit on Eliminating Racial Disparities in Health,January 9-11, 2006 Washington, D.C. • Prophylactic Post-Operative Antibiotics for Prostate Brachytherapy, Prostate Cancer Symposium, ASCO, San Francisco, Ca.,2006

47. Poster Presentations • Patient-Centered Satisfaction Measures in A Lay Patient Navigator Program for Underserved Populations in Oncology, accepted for oral presentation, Western Regional Meeting, February 2008 • Using Telesynergy to Improve Access to Clinical Trials at an Underserved Community Based Hospital, ASTRO, October 2007 • Evolution of a Novel Radiation Oncology Cancer Disparities Research Program in an Indigent Los Angeles Community, ASTRO, October 2007 • Patient-Centered Satisfaction and Well Being Assessment in a Lay Patient Navigator Program for Underserved Populations, ASTRO,October 2007

48. Poster Presentations • Lean Thinking Process to Improving Navigation, Cancer Health Disparities Summit, July 16-18, 2007 • Lay patient navigator program for equal access to cancer care and clinical trials, ASTRO Health Services/Outcomes Research In Radiation Oncology, San Diego, CA September 15, 2006 • A Lay Patient Navigator Program as Part of a Clinical Trials Infrastructure in a Community Hospital Serving Minority and Low Income Patients,Poster Presentation at the Cancer Health Disparities Summit 2006, Bethesda, MD, July 17-19, 2006

49. Pending Articles • Lay Patient Navigator Training Manual • Efficacy of Navigation for the Indigent Cancer Patient • Barriers to Care in Oncology: The efficacy of  Lay Patient Navigators” • Findings From the ULAAC Disparity Project: Navigator and Patient Characteristics • Emerging Approaches for Identifying and Targeting Disparities: Utilization of Quality of Care Evaluation Metrics

50. Recent Coverage Uprising Radio Broadcast, December 12, 2007 “Another Inglewood Hospital Threatened” Ivanhoe Broadcast news, December 11, 2007 TV story on Patient Navigators (to air in March 2008) Past Coverage La Opinion article, November 11, 2005 “To Navigate Services in a Health System: The Patient Navigator Program Helps Sort Through Obstacles that Make It Difficult to Treat Cancer” Inglewood Today article, October 12, 2005 “Taking Care of Business: The Urban Latino African American Cancer (ULAAC) Disparities Project” KCAL 9 news station (CBS) – December 7, 2005 2:00 PM, 3:00 PM, and 4:00 PM news “ULAAC: New Cancer Program Helps Patients Navigate System” http://cbs2.com/video/?id=11126Akcbs.dayport.com On Target “Documentary 2005” Media Coverage